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Monday, August 15, 2011

Being a difficult patient

Especially since I'm a doctor myself, I hate being a difficult patient. I want to be the sort of patient who does everything the doctor tells me to do and never complains and is always healthy.

In some sense I've succeeded. As a mother, I don't call the pediatrician's office after hours more than once or twice a year. Aside from making appointments, I only called my OB's office once: while in labor. But I also feel like I should advocate for myself a little bit as a patient, and I worry that sometimes might cause me to be perceived as annoying.

For example:

At my last visit to the OB/GYN, it was noted that I had my last pap smear six months ago. As such, the doctor told me I'd need to come back in six months for my next annual pap.

Now don't get me wrong, I love getting paps. I love having to pay for them out of pocket due to my deductible, I love waiting an hour to get in to see the doctor, and the exam itself is pure enjoyment. I wish I could get them every week. But in actuality, the guidelines from the ACOG say:

Women age 30 and older who have had three consecutive negative cervical cytology test results may be screened once every three years

And actually, the last doctor I saw before I moved a couple of years ago was a primary care physician who confirmed that I only needed to get this delightful test every three years.

So now I have two choices: I can either get an inconvenient and expensive test I don't need, or I can be that patient who shows up with the ACOG guidelines in my hand and explains why I'm refusing the exam.

I don't think you're being difficult at all - there is probably a rude and annoying way of talking to your doc about this, but if you can do it tactfully and with respect (I bet you can!), then you are doing everyone a favor. You don't have to get an uncomfortable and expensive exam and the doctor can be kindly reminded that times have changed. I think it is important to resist overutilization of unnecessary care.

I feel like this ob/gyn office is all about doing unnecessary tests. I already refused one test they wanted me to do because I felt it was unnecessary, so I feel like if I question them again, I'm definitely going to be marked as a "difficult patient."

If a patient shows up and points at accepted guidelines such as ACOGs, it's only right that we as their doctors explain why we want to act in discord with those guidelines. Hell, we HAVE to, the patient has to give informed consent to that pap smear or whatever, and we better be able to provide them with an explanation of why we're doing it.

I can see the 'difficult patient' scenario, but I also think it applies to truly difficult patients. You know, the one who would look at ACOG guidelines and wail "But I WANT a yearly pap smear and since I pay you, YOU'LL DO IT!" Or, alternatively, the one who would look at ACOG guidelines and yell "But I had a pap smear 16 years ago and it was FINE and this here is just big pharma crap so you can STEAL MY MONEY!"

Guidelines are there for a reason, but they are just that, guildelines. If your Ob/Gyn has a good reason to screen you more often, I'd say go for it. But he better give you that good reason first.

It kinda sucks that pointing out governing guidelines is "difficult." I'm a lawyer and if one of my clients pointed out a new case or law or whatever that was now the standard, they wouldn't be "difficult" by asking that I follow it. If that's all I have to do to be labeled a "difficult" patient, shoot me now.

Snarky: I guess I just assume that if the gyn says I need the test, she believes it. And if I show her any guidelines, which I presume she must already know, it's not going to convince her otherwise, it will just be annoying. But I honestly can't believe I need it. I'm over 30, monogamous for many years, and never had a positive pap.

Be that patient. If your doc is worth her practice, she'll be fine with it. We all develop habits in medicine that we sometimes stick to without thinking hard enough -- I would hope I'm aware enough as a physician to not take challenges to little things like this personally.

I think it is reasonable to politely disagree with the guidelines as back-up. If you aren't comfortable speaking up about it (especially as a physician), then maybe you need to find a different OB/GYN. All of the GOOD doctors that we've worked with for my daughter's care (and there have been a great many), would be fine with this sort of polite discussion.

To clarify something I said earlier, the reason I'm more hesitant about this is because I refused to do the full testing for gestational diabetes, and I got treated like the biggest troublemaker in the world (by a covering OB/GYN, not mine). I even cited literature supporting my decision and the doctor made me cry.

I try not to worry about being "that" patient or for that matter, "that" mother. What does that even mean? The informed one? The one who actually cares?

For my last pregnancy, I could have been regarded as "that" patient. I needed some extra intervention in order to carry the pregnancy. Yet I declined all prenatal testing beyond the level II ultrasound and in general, tried to have the least amount of intervention possible, beyond what was necessary. It was like threading a needle, but my care providers were right there threading along with me or I would have been miserable.

Since your bad interaction was with a covering OB/GYN, not yours, I would try to let this go, while sticking to your guns about the PAP. I'm not a doctor, but I'm sure most docs sometimes have to be covered by other docs that they are not fully simpatico with. Maybe try to avoid the covering OB/GYN in the future while giving yours the benefit of the doubt, at least for now?

You can't worry about being "that" patient. This is your care we're talking about here. Of course be sweet.... with the caveat that we all know it doesn't really matter if you're sweet. Many doctors don't like to be challenged by anyone. Ever.

You could also offer a compromise -- offer to be tested for HPV, and if it comes back negative, then you get to forgo the pap for the next 3 years. Also, you might want to provide your new ob with your old pap results so that she doesn't just think you're bs-ing her. Just a thought.

Fizzy, have you or will you write about your experience with gestational diabetes testing? I have a friend who refused testing for personal reasons (she is a very strict vegan and had read that the drink is not vegan-friendly...did you know white sugar isn't? I had no idea until I met her) and her doctor was so obnoxious and rude to her that she ended up leaving his practice mid-pregnancy and now plans on delivering at home with a midwife bc she feels she was denied her right to refuse care. He totally ruined her trust in every truly having a doctor on her side.

As far as this goes, I can't see why she would consider you "difficult" if you brought up the guidelines. It's silly to pay money for something that you don't need. Ask her if there's a reason and if she can't give a good one then decline. Excess testing and excess treatment is no better than too little testing or treatment. Just talk to her!

OMDG: You hit the nail on the head... doctors do not like to be questioned. I suppose I could provide my last two paps for her, which would not be incredibly easy considering that practice was in another state, but I feel like she ought to believe me. When I told my PCP that I got my flu shot at work, they didn't require me to give proof of that.

Danielle: I didn't write the story of my GD test here, but I wrote it up somewhere else. Since it seems to be of interest, maybe I'll try to find it and reprint it here. It was a really crappy situation and while I didn't abandon the practice, it gave me a bad feeling about them.

Fizzy, if she really believes you need the test, as you believe and I certainly hope, then it should take all of two minutes for you to ask, her to clarify and you to agree. Case closed, smear done, everyone happy.

But if she doesn't have a reason, it'll probably get pretty obvious pretty fast. And if she doesn't, there's no reason for you to feel bad about it, when she should be the one feeling bad for pushing something on you that is in no way needed.

I admit I am a bit puzzled, if you had a normal pap six months ago, it makes no sense to do your "annual pap" in six months. Was HPV testing done? Was it positive? Am I missing something here? However, if you have not had a normal pap with your current provider (or any pap) it is certainly reasonable to bring copies of your most recent tests to your physician's attention. Could it be that your physican was referring to your annual exam casually as your "annual pap?" I find a lot of patients don't want to show up for an annual exam *unless* they think they are having a pap.

While it is true, over the age of 30 with negative pap/negative HPV, you only need a pap smear every 3 years. As for the expense of the test, if it is done at the annual, it should be covered with the annual exam fee, should you need to have one done. Talk to your physician about your concerns! Usually I'm the one having to convince patients that they don't need a pap this year! You still need an annual breast exam and pelvic every year, though, so don't forget to do that! :)

Dr. Whoo: I did have a negative pap with this doctor six months ago so she had this on record. Never had HPV testing. It's possible I imagined the word "pap" when she just said "annual exam" but it's still confusing to me. She had just performed a breast exam that day as well as a pelvic exam, so why would I need to come back in 6 months for an "annual"?

Oops! Reading comprehension! Also saw the part about your deductible, I sympathize! :) So you probably had your PP check, right? Which is a breast and pelvic exam to see how you are healing PP and included in your global fee, therefore, not technically, an annual exam, where preventative care is discussed etc. etc. If you wanted to push your annual out until 1 year from your PP check, that is well within reason, and then discuss the pap issue at that time. No difficulty involved. :)

Annual pelvic is our best way to screen for ovarian CA, evidence based. PCPs don't like to do them. GYNs are the only ones who "go there." We also screen for skin abnormalities of the vulva and vagina. I've diagnosed a melanoma a time or two. Also diagnosed a colon cancer on pelvic exam. We don't just do a pap when we are doing pelvics!

"If you wanted to push your annual out until 1 year from your PP check, that is well within reason"

I wish she had said that to me.

Also, regarding the pelvic exam issue, when I was reading about it, I did see some articles saying that it may not be needed (http://www.liebertonline.com/doi/pdfplus/10.1089/jwh.2010.2349), although this is definitely a case where I don't know all the evidence. To play devil's advocate though: you've probably done hundreds of thousands of pelvic exams but it sounds like you only detected cancer a handful times. I don't think that's an example of a high utility test.

Fizzy, far be it for me to browbeat you into showing up for an annual exam. If you don't want to do it, don't do it. If you are healthy and not having any issues then you are probably just fine to skip it. It's what is recommended as preventative health maintenance for women in our age group. You know, ounce of prevention worth a pound of cure and all that jazz. Do with that what you will. ;)

I had the same question regarding this and my OB said that I need an annual pap and exam because I'm on estrogen/progesterone therapy (aka: birth control) as it can cause epithelial cell changes on the cervix hence necessitating pap smears yearly. But I didn't look it up, so it might be a "made up answer" (now reading your post makes me question it, am I a "difficult" patient then? lol)

That said, I seem to have the most trouble with my OB (and not my PCP) when it comes to questions or explanations for what he wants to do and more importantly why. But although he gets squirmy about explanations I still ask only because I DO agree with his medical judgement and although I wait 1.5 hours for each prenatal appointment, I still like how he practices medicine. Sounds strange, I know. He has gotten used to me and we have been getting along. :) (although it was a learning curve). Maybe it's the OB profession in general, since they ONLY work with women and tend to try to minimize talking/explaining/complaints? otherwise they'd be there all day? or maybe some issues discussed are trivial in their minds since they consider themselves surgeons... I don't know...

Gyne resident here. Fizzy, I've totally been that patient. After having 5 UTIs in 6 months I went to student health for prophylactic (or self-treating)antibiotics. I was informed that "no, we don't do that here". I armed myself with the SOGC guidelines on treatment of recurrent UTIs in women and went back to my family doctor. He too, didn't want to prescribe. I felt badly being "one of those" patients who we all find frustrating, but I was tired of sitting in ERs in random places while on vacation.

I think it's ok to be your own advocate when need be. A care plan should be agreed upon by both parties, and sometimes this means having an open mind as a physician.

As for the pap stuff, I can't see any good reason why your OB would insist. Is there perhaps a fear of litigation driving this? In canada the guidelines will be moving away from such frequent paps sometime in the near future.

Hmm, if this makes you qualify as a difficult patient, god knows what I am!! I've had a number of complications in my 2nd pregnancy, most significantly a spontaneous (non-traumatic) abruption, resulting in my now being on bedrest (4 weeks and counting; a topic for another day). And I am a nervous wreck.

So now, instead of being a normal MD who plays everything down and acts in an evidence-based way, I am regularly calling my other MD friends to calm me down/give me reality checks. (Am I leaking amniotic fluid? Are these contractions close enough for me to go in? Do you think I'm having a silent re-abruption? etc)

So don't worry too much. Craziness is relative ;). I wish I could follow some guidelines right now!

I'm guessing she recommended the Pap because she hasn't done your last 3 Paps to be able to confirm that they are normal, has about 15 mins to see you, learn about your history of sexual partners/risk factors for HPV, and do your breast exam and Pap and whatever else. The reality is that it's just far easier for her to repeat the Pap than to track all those records down or ask you to do it and then follow up on whether you did it. My guess is that if you simply walked in with the path reports in your hand from the last 3 yrs, and therefore make it easy for her, she'd be delighted to skip the Paps and pick up a few mins in those visits to keep chugging through a busy day!

if they really make you feel bad, you should switch doctors. but just because i recommend something different than a patient ultimately does, doesn't mean i think they are difficult. ask any questions, explain your reasons if you still feel the same way, and then move on. he/she will too. if they don't, definitely time for a new doctor. i don't think i get the pelvic / pap distinction fully , as an aside.

As a patient with a extremely complex (aka rare) disorder) believe me I worry about being difficult quite often to - some drs I know dont mind the questions, others I dont know how to read and still other drs I think avoid me and are plain afraid of my knowledge. (that sounds like I think I know it all which I dont but I have become very aware of the recommendations for my disorder and I am involved in my care and decisions which some providers just dont like) I am gladthat drs to feel these concerns because we as patients sometimes feel like some of our drs are extremely distant, cold and heartless to! Doctors who we see for years on end and quite ofen (I for instance receive a weekly enzyme replacemet infusion every monday and my rx;ing dr there will talk to the other pts there but will never come within 10ft of me bc these other patients (who I am friends with) dont quesiton his 'advice' while I do question it because of what other providers have told me. Anyway thanks for writing this!

Regarding your comment about the utility of doing pelvic exams - while it is true that problems are picked up rarely, it is a low cost and low adverse event frequency test, which is ideal even if the incidence of whatever it is we are trying to pick up is very low.

Even if we think ovarian cancer is rare (although it is among the top 10 cancers and top 5 cancer killers in women in the US, so in reality, it is not entirely rare) and even if the pelvic exam picks up only a few of them, it is still worth doing because it is inexpensive, low-tech, carries negligible risk of injury or harm, and yet can save a life.

Tempeh: It seems ridiculous to me to repeat a somewhat expensive test rather than tracking down the results. If we're trying to control health care costs, this seems really excessive. Besides, like I said, the doctor doesn't repeat my flu shot if I don't bring in documentation to show I got it. Isn't my own knowledge of my previous health interventions worth something?

Dear Fizzy, we will have to agree to disagree on that issue, because if we apply your criteria, then virtually all preventive screenings can be dismissed in the same way, including the breast exams which you are encouraging.

Unfortunately, this is one of many challenges we face on the public health front. I hope that with more of us having training and experience in public health (this is where MDs with an MPH, and/or added public health exposure in medical school and beyond are invaluable) we will be able to allay some of this skepticism towards and mistrust of public health research and initiatives.

The foundations of the recommendations for the annual breast exams, tri-annual Pap smears and annual pelvic exams are the same (i.e., public health research), so it seems a little odd to pick and choose which recommendations we follow based on nothing but subjective feelings.

It is hard to gauge how tone is perceived via written notes, so I just want to make it clear that nothing I have said is meant as a personal affront to or criticism of you or your position. Everything I have written is meant very cordially and in a collegial spirit. You have made it clear that you are seeking reasonable evidence and discussion on this topic, and that is certainly something I also aspire to do when in doubt.

White Coat Dreamer: I absolutely appreciate your intelligent thoughts on the matter and didn't take it as anything other than an interesting discussion. This is my response:

A good screening exam is one that increases survival and in which the cost is justified. Obviously, we DO have to pick and choose which screenings we do, but it should be based on evidence, not subjective feelings. There are reasons why, for example, we don't do yearly X-rays to screen for lung cancer.

I don't know as much about this as some of the ladies on this blog, but I did cite that recent (2011) review in which multiple articles were cited that said pelvic exams were not useful for picking up ovarian cancer. Anecdotally, if a very skilled gyn like Dr. Whoo has picked up a couple of cancers in her career, does that justify the cost as well as all the distress from the test and false positives? It's all about numbers, and based on that article, the numbers don't support it. If you have to do 100,000 pelvic exams to pick up one actual case of ovarian cancer with god knows how many false positives, then that's not really worthwhile. And I'd suspect that at the point an ovarian cancer is big enough to be picked up by pelvic exam, it's probably advanced enough that this exam does not increase survival. (But like I said, I'm not an ob/gyn. I'm basing this on one review article.)

As for the breast exams, it's my understanding that this has more utility and less cost. But I don't know for sure.

Fizzy, you are absolutely right, we do have to choose what screening programs we implement, and those programs change as the evidence changes. I am not an Ob/Gyn, though I did some Ob/Gyn preventive medicine research as a graduate student (before going to med school), and my data is likely outdated. I will try to look through what you have cited, and indeed if we don't lose valuable preventive benefits by not being poked and prodded every year, I am quite happy about that. ;)

Um, has anyone on here even considered that this is a VOLUNTARY SCREENING tool, nothing more, nothing less? False positives anyone? Unneeded colposcopy/LEEP/Cone biopsies as a result of false positives? If you don't want a smear, calmly state to your doctor that you are there for whatever it is that you are there for, ask them to mark on your file you have made an informed decision NOT to have a pap and can you please now get on with the reason you are there. Do you see men getting harrassed to be checked for prostate or penile cancer like women are for cervical cancer? Never mind that prostate and penile/testicular cancer are MUCH, MUCH more common. Oh no, men just say "no thanks" and end of story. Check Dr. Andela Raffle's statistics and facts about this testing. 1000 women would have to test for 35 years to "save" one woman from cervical cancer. I am assuming all you guys know about the high rate of false positives for women under 30 etc, and the fact that virgins, women in long term mutual relationships, women with non cancerous reasons for having hysterectomies don't need to be tested.

A "good" screening test is informed by either individual or societal values. Apart from this, which makes any decision potentially gray, a good screening test needs to pick up people who would develop or progress to life-threatening or function-threatening illness (thus improving survival or a patient-important outcome) for which the course of the condition can be altered by early intervention or therapy. If there are too many false negatives, this is obviously problematic. If there are too many false positives , and either the screening test, subsequent workup for a positive result, or treatment has enough risk of harm, it may outweigh the potential benefits. But as all of this gets interpreted through the lens of values, you can arrive at different conclusions with the same data.

I'm coming in late to the discussion, but I'm wondering - Is this a new thing?

I'm still in my first trimester and went for my first prenatal appointment at 8 weeks. They told me at the time that I would need a Pap, despite a negative pap and HPV test 8 months ago and three prior negative annual Paps. When I told them that that wasn't the recommendation and that, indeed, I wasn't due for another Pap until 2013 bc of the negative Pap and negative HPV (according to current screening guidelines), the excuse I got was "Well, things can go sort of wild in pregnancy, so we need to do it anyway to make sure that you don't have something."

I've not been able to turn up anything on specific testing of pregnant women who've met the criteria for reduced screening. I submitted to the test because this practice is the best / most convenient option for me and I didn't want them to refuse to see me. I just wish they'd practice on guidelines instead of trying to CYA instead.

I do think it's worth mentioning that all of this went down before anyone sat down and took or had me fill out a sexual history to determine my "risk." This didn't happen during my first pregnancy (in fact, I went almost 18 months without a Pap that time!).

Anon @ 8:53: That's interesting you say that, because I did get paps during both pregnancies, even though I wasn't due for one. I didn't ask about it because I was already at the office and it wasn't a big deal. But it does seem like everyone I know has gotten a pap during pregnancy, like it's a standard thing. I don't know what the guidelines are on pregnancy and paps.

I think Old MD Girl hit the nail on the head with that one. I had a friend who was very upset that they did a bunch of STD testing on her for her first pregnancy as her and her husband had only ever been with each other sexually. As cynical as I am, it's one of the few cases where I actually believe that is true. I told her that even knowing her and her husband as well as I do, I'd have done the testing if I was in her doctors position, because too many partners have trouble being honest w/ each other or their doctors about sexual activity and my obligation would be to protect the safety of the child first and foremost. I told her about the number of positive pregnancy test my lab has done on people who 'had never had sex'. It can be a very sensitive issue.

According to the CDC, there is no reliable, cost-effective, non-invasive method of screening for ovarian cancer. That includes pelvic exams. Look it up. The blog Science Based Medicine included an article re: whether the pelvic exam should be abolished from the annual exam because it's useless in asymptomatic women.

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